Tuesday, July 31, 2007
Yesterday Dillon had three appointments in Philly. His hearing teacher's 22 year old daughter went with me. I couldn't find anyone so when she volunteered her daughter I took her up on it. It was very nice of this girl, who had never met me before, to be at my house at 6:30am and not leave my house until 6pm! Thank you very much (if you ever read this)!
Appointment 1: Feeding Team
Summary: Waste of time
Explanation: We got there and the team wanted to know why we were there to see them. Okay, they have Dillon's records in their hands - why on earth do they feel the need to actual make me say "uh DUH! because he can't suck or swallow!" But anyways...the speech therapist confirmed with a stethoscope that she did hear a SWALLOW! Praise the Lord! However, they do not know if he swallowed to his stomach or if it went into his lungs. For reasons I do not understand, and have a call into them today to make them explain it to me again, they will not do the saliva gram to see where he is swallowing to. This makes me so mad because if we knew it went to his stomach we could start to give him food, if it is going to his lungs then we need to know to keep a better eye on him to make sure he doesn't get pneumonia. They did suggest a car seat bed since Dillon is having a hard time in the upright position. They want him to increase his food because he's underweight. Really?!?! Dillon is under weight?!? I never would have guessed! So they want me to increase him from 700ml to 800ml of food a day slowly...in two days! Okay people, that is not slow. One of the doctors asked me, "Has anyone ever talked to you about a trachea?" WHAT IN THE WORLD IS WRONG WITH THIS DOCTOR??? Why would she bring that up, he is doing great! Yes he still labors to breath a little, but not enough for a trachea, she needs to stick with doing her job of "feeding team" (because she was having trouble with doing that) and leave that up to the lung docs - who she knows I am seeing next week. I was told their only suggestion was to see GI but oh wait, they know I am already seeing them next week as well. When asked, I was offered NO suggestions on how to increase the frequency or effectiveness of Dillon's swallows. In fact, they went as far the opposite direction to tell me that the vibration I am doing with him has absolutely no proof of it working, but to "continue it anyways because he is so severely injured and not getting sensory things, that who knows, maybe it will do something for him." What a waste of my time, they gave me no new ideas, told me what I am doing is ineffective, and told me they aren't going to help me determine if I can give him anything by mouth.
Appointment 2: Urology
Explanation: Everything checked out fine, the doctor just wants to follow up in a year.
Appointment 3: Ophthalmology
Summary: Why do I even bother?
Explanation: First of all, we didn't even get seen for an hour and a half after my appointment time. I tell the docs all about Dillon's vision, that he only tracked once and that we sometimes can get some reaction to lights (sometimes he seems to "find" the light with his eyes). So what does the doctor do? She pulls out a light blue beanie baby bear (Keep in mind with CVI they see red and orange better than any other color) and puts it in front of his face. At this point, I was either going to yell, be very rude, or cry...so I remained silent. But I really wonder where these people went to school. They didn't even give Dillon a far chance to show them what he can do. They should have used a colored flashing light, or at the VERY least a black and white and red object. I asked about a therapy technique I have read about in "What to do about your brain-injured child" (I'll explain that in another post) and the other doctor said "Don't get your hopes up, there's no proof that it works." Not according to the book and the research in it. He also told me that he doesn't need to see Dillon for a year. Why? I asked. Because "There isn't going to be any change in him, so I don't need to see him." He had just finished telling me that since Dillon's vision wasn't better by a year it isn't going to be. Well thanks a lot for writing off my child, Doc, but if it's alright with you we aren't going to! Oh, and he also informed me that since Dillon's cheeks are broader than his skull it shows how badly hurt he is, another reason why we aren't going to see any improvements.
So, how's that for a day, for you?
Saturday, July 21, 2007
I love how he fell asleep...so cute!
Don't I look like a little Marine, especially with the High-and-tight Daddy gave me?! (We were letting Dillon's hair grow so we would have enough to send away for a hair anaylsis, so we finally cut it last night and sent that away today. I'll let you know when I get the results.)
Daddy is teaching them young....
Tuesday, July 17, 2007
A family in our church gave Dillon this big bean bag for his birthday to help with positioning, but JayDonn enjoys it too.
We took Dillon and JayDonn out to our little pool tonight. Since it wasn't extreamly hot today the pool water was pretty cold. As soon as Si put JayDonn's feet in the water he started to cry. Si got him in to the waist, but JayDonn did not like it one bit. I got Dillon's feet wet and e pulled them up and at one point he sighed. But he did better than JayDonn. Keep in mind JayDonn hasn't even been in a bath tub yet because his cord just fell off. After a short "swim" the boys got in the tube with Daddy. It was oh so cute! JayDonn started to cry, then when he realized it was nice warm water he relaxed and almost went to sleep! Silly boy! Dillon started to wiggle when he got in.
Sunday, July 15, 2007
Click here to see Dillon "swimming".
If the link doesn't work here is the URL http://www.youtube.com/watch?v=sinDvGBD6us
Someone please comment and let me know if the link worked. Thanks
Friday, July 13, 2007
Dillon met JayDonn shortly after he was born, of course I don't think either of them really had any idea, but it was cute for us. Later on we saw that anytime JayDonn is within reach of any part of Dillon - arm, hand, knee - he sucks on poor Dillon! It really is quite cute.
Dad and Mom Kuenzi and Hannah were here helping until the 4th and my parents arrived the 4th until Monday. So I have been on my own since Monday. Things are going okay. I took my first trip out with them yesterday - boy do we draw attention! Me pushing the double stroller, everyone thinks they are twins until they look in, and JayDonn screaming which draws even more attention! Ikes! But I was able to hand out one of Dillon's tracts to the cashier at walmart and the other cashier instantly took it from her to see what it was too.
JayDonn doesn't cry too much, he really is a good baby. He will be awake for up to two hours at a time sometimes and he will just look around and play with his fingers. One night he was crying just to be held so Daddy put him in the boy's room in the crib (he is usually in the bassinet next to my bed) and let him cry for a bit. He didn't do that again the rest of the night or the next couple nights.
That pretty much sums it up - JayDonn's first two weeks of life! Thank you to all those who prayed for a healthy baby! He is, and what a blessing! It has been hard, having a healthy baby after Dillon. It was hard to see JayDonn lifting his head at one day of age almost as well as Dillon can at 13 months, to see JayDonn making more connections with us than Dillon has ever been able to do, to hear him cry, to see him eat, to watch the funny faces he makes with his mouth, etc. I have thought of it as being like peroxide. When I was about 7 I stepped on a nail, my dad poured a bottle of peroxide on my foot and I remember screaming my head off because it hurt so bad. today, however, I am not sure if I can find the scar on my foot to know which foot it was. The stinging peroxide helped heal my wound. JayDonn is going to be my peroxide. It stings, it hurts, it tears my heart out to now fully see just how injured my precious Dillon is, but one I will heal and God is going to use JayDonn in that healing process.
Oh yeah, we are starting to do fund raising for the Oxygen treatments for Dillon. My parents are having a yard sale in August where people from church and friends have donated things to sell. The yard sale will not have prices, they will accept any reasonable offer and it is being advertised as a fund raising thing for Dillon, so we will see how that goes! I have to make an appointment next week with the branch manager at the bank to set up an account for the money to be held in until we are ready, this way too, if people wanted to send the money directly to the bank to know it is more legit they can.
One more thing... I am getting the process going on nursing care. If I can figure out why Dillon is having so many secretions (soaking through full bath towels folded so it is 4 layers thick) at night and help correct this then I will just get the nursing care of one day a week so I can run errands. If I cannot fix his secretion problem I will have to get someone for at nights so the poor boy doesn't cover himself with secretions every night.
Okay that's it!
(Well after I wrote that I remembered - Josiah starts a new job on the 24th, it is a step forward in the direction he wants to go in, so he accepted the position)